The Edge of the Precipice

It's been several weeks since I've actually published an update on Ashley.  The truth is, I had written an entire update nearly two weeks ago, but I hadn't fully proofed it and the daily grind got in the way of actually getting it pushed out.  If you'd have seen the update then, you'd know that two weeks ago we were starting to decline even further.  

Actually, I'll just copy and paste a large chunk of what I had written for some insight into how life has been recently:

It's hard to know what is worthwhile to share and what are the minor nuances of the day to day that are likely just use as caretakers being extra sensitive to. The general idea, though, is that Ash is declining.  If you look at it week over week, we are noticeably further along the path than we were.

If you want some candor, this part of the journey is absolutely the worst (to date).  Originally, there was something so raw about the initial diagnosis that it was a tough few days/weeks to process.  Even over the past four plus years with significant milestones of decline, it was a bit of effort to strain through those moments to normalize a new routine, but this... this is a moment by moment, outside the wire struggle.  There is no reprieve, there is an 'always on' mentality.  There is no establishing a new normal with this phase as each day brings with it some sort of curveball.

In times past, it'd be Ash and me managing whatever change occurred between just us and then bringing others around us up to speed.  Now, the changes are felt by the family immediately; the girls, Honey, me... it is all more exposed than it was.  this certainly provides opportunities to temper reactions and interactions when the girls are present, and to navigate through some hard moments with a gentleness that we otherwise previously didn't have to employ.

Speaking of the girls, even though there are moments of sadness and questioning, let's pause for a moment and praise God for the moments of grace He has shown to those two little redheads.  Honestly, they are handling a lot of this way better than I am.  Perhaps it's the resiliency of being a child, maybe it's the fact that God has placed some incredible support structures around them, could even be the fact that they've not really known much different for a majority/entirety of their lives... whatever the case: God has been faithful to provide for them.

No doubt this could be expanded upon, but I'm convinced that this stage of the journey is grief manifested.  Regardless of how long the journey is and barring any miraculous intervention from the Lord, the final stages of life are the heaviest for two parties: those who are about to die and those who are caring for the ones about to die.  the grief of lost opportunities and life un-lived by the former and the brokenness of the situation by the latter.  The heaviness of that grief grows daily.

Speaking from the caregiver end, watching the light of the one you love and are married to start to dim creates a trove of thoughts and emotions... non of them are happy or fun, save one: this period is brief, albeit the worst.  Hearing words descend into an unrecognizable expression, feeling the literal weight of the inability to support oneself, watching the physical posture collapse in on itself, seeing the sadness/confusion/fear on her face... this is all absolutely gut-wrenching.  It creates this dichotomy of wanting to hold on to these moments as tightly as possible, but also relenting and praying for the mercy of the Lord.  This, to me, is one of the hardest thoughts to manage.  I'm resistant to macro levels of change in short periods of time (shocker, I know) and one of the things I am continually having to remind myself of is that this has turned from a problem that can be fixed into a palliative operation.  that's contrary to how I function, and these past few weeks have gone a long way to open my eyes to that reality.

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Those words still hold true and are reflective now even in this ever-changing season.  Two weeks ago, Ash was struggling a fair amount.  She could barely communicate, she was starting to lose the ability to support herself physically, she was growing increasingly frustrated/confused... all in all, it was a tough couple of weeks.

So now, on to a more present day update [in full disclosure, I'm tired and I'm not proof-reading this before I post it so you're going to get a lot of '...' and broken grammar; I'll pre-apologize to anyone that gets hung up on that :) think of this as a stream-of-consciousness reading assignment]

The above would have been a helpful update to share with everyone a couple of weeks ago... a nice way to let everyone know how to come alongside our family in prayer.  I'm sorry for not pushing an update then, but let me share something that is both humbling and encouraging. Even though I didn't push an update, there has been such an uptick in random, unsolicited messages sent my way.  Ranging from 'Thinking of you guys today' all the way to 'Don't know why, but I am stirred to pray for your family today'.  When I say an uptick, I'm talking about no less than 20 messages over the past 10 days and some even from friends I haven't spoken to in years.  

Perception and logic tell me two things about the wave of messages: There are so many people sensitive to how the Spirit leads them and it is so encouraging to how emboldening the Spirit can be to lead others to reach out.  The second thing I immediately started to think, about the time the fourth message rolled into my inbox... buckle up because these prayers are preparing you and your family for the coming days.  I've not been able to shake that thought... and, as you'll read below, for good reason...

Saturday evening (4/23) we started to notice that Ash was having an increasingly difficult time sitting upright when she was in the recliner or using the restroom or being pushed from room to room in the rollator.  We'd gone through some short periods where that was more of a struggle, but this persisted.  

Leading in to Sunday, and without going too much more in to this for dignity/modesty purposes, we had some accidents in the bed and recliner.  I don't bring this up for any other reason than to highlight this next point: Ashley, as difficult as it is for her to communicate, would frequently say 'I'm Sorry' [which is such a testament to how her heart is wired to not try and cause inconvenience].  I'd respond back to her the same way every time, "Do you have control over your body to stop it from doing that?" to which she'd respond 'No' each time I'd ask.  And so, "If you don't have control over it, there's nothing to apologize for... it's an accident and it's part of what's going on".  I'm still so enamored by how her attitude and heart yield for the concern of others and that will be one of the things I will hold dear moving forward.  

Anyways, continuing on... We normally have our weekly hospice visit on Tuesdays, but because of the sudden change in things and the frequent accidents we asked the nurse to bring some additional supplies on Monday and she graciously adjusted and made her visit Monday afternoon instead.  One of the things Ash is also battling through right now is a pretty gnarly cough.  The nurse took notice of that as well and we've started an antibiotic and breathing treatments as a result.  Coming along with that, she asked to follow up again on Thursday.  Agreeing to that (because a follow up is a worthwhile idea given the stark changes that have been happening) we also agreed to start having 2x weekly visits instead of just 1x.  

So, Tuesday rolls along and Ash is starting to struggle significantly taking her medications (specifically the pills), we also had a couple more accidents and have now documented a decent drop off in fluid intake/output.  Her words are all but non-existent, save one word responses here and there or a good grunt or two to indicate satisfaction or displeasure with the options presented.  

Wednesday brought quite a change: once Ash got ready for the day, ate breakfast and took her meds... she slept... in the bed [sidebar: we had a hospital bed delivered a little over a week ago for her to sleep in at night]... for over 8 straight hours before waking up for a breathing treatment and then falling back asleep for 3 more hours before getting up for supper/meds/bedtime routine and going to sleep again.  I know that doesn't sound like a big deal, but it was on the heels of a long night's sleep and for comparison's sake, she normally dozes for 45 minutes, wakes up for a bit and then repeats that process.  She also didn't drink hardly anything when she was awake and went for nearly 18 hours without using the restroom...  It's also key to mention that she has absolutely ZERO in the tank when it comes to standing or moving around.  Anytime I need to move her, it's a bearhug/deadlift/squat to carry her from one place to another.  This is terribly uncomfortable for her and we try to minimize this as much as possible.

Today (Thursday) brought a new set of challenges and changes.  After battling a short bout of restlessness this morning, she slept for a majority of the day again.  When her nurse came to check on her, we noticed that she was pretty hot.  Her lungs were clearing up and you'd expect her vitals to be reading better, but her O2 is floating in the mid-90s, her pulse is fine, her BP is a bit lower than her normal (and has been since Monday)... but that fever, that's a problem.  Couple all of those vitals with increased sleeping, decreased fluids, etc. and you've got a scenario that we've all dreaded for a while.

We are at the edge of the precipice...

There is this anxiety building inside.  I'm not terribly anxious about much of anything these days, but I can feel the pangs and swells of it starting to grow in my heart.  Certainly something to pray for, but I feel like anyone who's been in this situation before (or something similar) can relate to.  There is this uneasy feeling, like walking to the edge of a cliff and even though you're harnessed in and your ropes checked out... the feeling just before taking that first step over... that's what I feel right now.  I know what's coming, there's nothing I can do to stop it. I know it's going to hurt. I know my girls are going to get hurt.  My family will forever change. ...and there's nothing I can do to stop it.  That... that's what's building.  But then, I remind myself that we've known this for years now.  We've been preparing for this day.  All of that faith/trust that we've put in the Lord leading up to this season, none of that's wasted; if anything, now's the time that it's proofed. There is a sense of calm this brings.  I'll wrestle these two positions in the coming days, but I have zero reservation in saying faith prevails here.

So, you've read through this and are now asking where this leaves us.  I'll tell you, it's not fun.  Again, talking through all of this with her nurse... with all factors included, I asked what does this look like as far as the outlook goes.  We've not really had this conversation in a while (and quite frankly until this week, I would've said we could hold the course for another month or so)... but with everything unfolding like it is, the scale of this whole journey has dropped from a month or so down to days.  You read that correctly.  Now, Ashley hasn't followed a single time frame prediction throughout this entire journey and, who knows, maybe she continues to buck the estimations, but that's the funny thing about cancer at the end of the road; it throws a curve ball.  When a typical end of life scenario is run, there are some pretty good patterns and indications that can be very good prediction tools, but with cancer it's all kinds of out-of-whack.  Still, with all things considered, I asked are we on a magnitude of weeks and the response was 'days'.  2, 5, 10, 13... who knows, but I know we are, again, at the edge of the precipice.  I can feel the tension building.

Heavy news.  Heavy moments.  Heavy season.  (...should've worked out the legs more)

All-in-all, we're not even in the true thick of it yet, but we will be sooner rather than later.  In the coming days, if you'd pray for Ashley... that she'd be comfortable, at peace, that the Lord would, indeed, be merciful.  The dichotomy I mentioned in the excerpt from the previous post... it is now heavily tilted in favor of the Lord's mercy.  Pray for Ashley's mom and sister, not having lost a sibling or a child, I cannot begin to fathom the weight associated with those scenarios.  Pray that they would grieve well, that they would be comforted and that they would be surrounded by those would be instrumental in facilitating both of those things.  Pray for my daughters.  [Sidebar: my oldest has had a few rough days of school over the past couple of weeks; she is sad.  Understandably so.  When I pick her up and we start talking about it, those conversations have yet to end up in any way other than both of us with tears in our eyes and working through it]  Pray my daughters would see Jesus as the One who holds all things together.  That they would yield their spirit to Him and that He would flood their hearts and minds with the peace that only He can bring. Their worlds are about to come undone and I pray that they would find the only Rock worth building a foundation on in the process.

I know this post is heavy.  I feel it too.  I can't promise that I'll write another one in the near term with all that is going on at present.  When everything starts to go down, I'll do my best to keep everyone updated, but in the mean time go tell those you love that you love them.  Be thankful for the time you get to spend together.  Take advantage of every chance you get to grow together.  Be quick to listen, slow to speak and even slower to get angry (if you'll indulge the use of scripture here).  Most of all though, praise God for the breath in your lungs and may everything we all do be an act of worship toward Him.  Until next time...